[BBC Wales] Our son loved the outdoors – invisible illness means he now can't walk or talk

[InitialConditions]

A reasonably good article on the BBC focusing on some Welsh patients and the situation RE care and specialist services.

ME: Swansea man was active but now he can't walk or talk at 28

Tomos is one of thousands with ME in Wales, with services described as “a desert” for those most affected.

www.bbc.co.uk

There's also a link to a BBC Sounds / BBC Radio Wales piece with patients and the parents of a very severe patient: https://www.bbc.co.uk/sounds/play/p0n8643t

 

[BrightCandle]

They said they had tried to have carers at their home, but found that made Tomos worse.

This is one of the big problems, no one knows about this disease and can't deal with properly. I have tried to get people to help with various aspects like cleaning and cooking and it doesn't matter how many times I tell them about noise, light and other disturbances they always push my boundaries and make me worse and I have to fire them. I am trying to get a heatpump replacement for a bad boiler but the key consderations are my disease and I can't find anyone that will accomodate.

One thing I like about this article is its not beating about the bush about there being some wish washy undefined treatment plan or availability of consultants, its just straight up saying the NHS does nothing for ME patients. Despite all this pressure however still all the health services are doing is considering doing something. Fixing the research funding would be a mighty good start!!

 

[Trish]

I agree it's a pretty good article. It's good to show a range of severities, particularly very severe.

Quote from the article:

Betsi Cadwaladr University Health Board in north Wales has expanded its Long Covid service to include ME patients, using funding from the Welsh government's Adferiad programme, external.

Consultant physiotherapist Claire Jones said the service ensured people with any severity of ME could now receive "individualised support".

Does anyone know what 'individualised support' they are providing?

 

[Eleanor]

I knew I'd seen the name Betsi Cadwaladr somewhere. From the ELAROS seminar:

Claire Jones, Consultant Therapist at Betsi Cadwaladr University Health Board’s Living Well Service, will share their progress to introduce an integrated service to support Long Covid and other infection-related chronic conditions, ME/CFS and Functional Neurological Disorder.

Post in thread 'The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app'

Jun 7, 2025

There is an assumption among us on this forum that the intention is for the Tyson materials to become part of the app? Do we have direct proof of this?

Is it related to the PROM and Tyson and Gladwell? Don't bother answering.

From earlier on this thread:

MEA & Elaros joint event
https://www.eventbrite.co.uk/e/inte...=ebdsshother&utm_share_source=listing_android

I think it's worth copying the information again here:

Webinar:

Quote:

Wednesday, July 2
Integrating ME/CFS and Long Covid Specialist Services

Attend to hear about advances in clinical...

• Trish

• 

 

[Dolphin]

There is a trend on this on X:
Active Welsh Man Bedbound by Severe ME After Sudden Decline

Last updated 2 hours ago

This is generated by AI:

Symptoms hit Tomos in 2019 with dizziness, worsening by 2023 until a bath left him unable to walk—he's been bedbound since, signaling needs with glances. His parents Charlie and Myfanwy describe the heartbreak of watching their once-outdoor-loving son become 'invisible' without specialist care for severe ME, a condition causing extreme exhaustion from minimal activity. A BBC Wales report by Meleri Williams highlights thousands in Wales living in dark rooms, praises accurate coverage, and spotlights patchy services amid calls for a national plan and more research.

 

[Kitty]

And national plans and specialist care are such obvious things to ask for, aren't they. But what people like Tomos actually get are so-called services for long Covid being expanded to include ME/CFS, and this is presented by the media as a positive development.

 

[BrightCandle]

And national plans and specialist care are such obvious things to ask for, aren't they. But what people like Tomos actually get are so-called services for long Covid being expanded to include ME/CFS, and this is presented by the media as a positive development.

It feels like the current climate however with BACME being heavily involved means we wont get what is actually necessary, we are going to get a rehab service that we all have to hide form, again.

 

[Kitty]

It feels like the current climate however with BACME being heavily involved means we wont get what is actually necessary, we are going to get a rehab service that we all have to hide form, again.

Yep, that's what I meant. We won't get what's necessary until they start developing services for severe illness, and much of that would only be basic healthcare delivered at home until we have a treatment.

A recognition that people are so ill they need domiciliary care would be a good step forward, though. Until they start seeing it in front of their noses, healthcare professionals are never going to grasp how disabling ME/CFS is and how long it takes people to recover from minor exertions or interactions.

 

[MrMagoo]

I knew I'd seen the name Betsi Cadwaladr somewhere. From the ELAROS seminar:

Post in thread 'The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app'

Jun 7, 2025

There is an assumption among us on this forum that the intention is for the Tyson materials to become part of the app? Do we have direct proof of this?

Is it related to the PROM and Tyson and Gladwell? Don't bother answering.

From earlier on this thread:

MEA & Elaros joint event
https://www.eventbrite.co.uk/e/inte...=ebdsshother&utm_share_source=listing_android

I think it's worth copying the information again here:

Webinar:

Quote:

Wednesday, July 2
Integrating ME/CFS and Long Covid Specialist Services

Attend to hear about advances in clinical...

• Trish

• 

Poor Betsi, this isn’t a good way to commemorate her.


I thought it interesting that the ME service came about from the LC service, indicating that there were no ME services prior to the pandemic? I don’t think there were as I looked into moving to N Wales and there were none. Also there’s no way I can learn a new language at this stage.

 

[MrMagoo]

I want to meme this

It feels like the current climate however with BACME being heavily involved means we wont get what is actually necessary, we are going to get a rehab service that we all have to hide form, again.